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Does Anyone Like Being Celiac

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34 replies to this topic


Marilyn R

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Posted 08 November 2010 - 06:19 PM

I don't want to put a cramp on this post, but hello, MS and celiac has been linked. And celiac disease has been connected with several other autoimmune diseases. There is a definite link between MS and celiac disease.

Please do your homework before throwing forks. Or put a half cup of "shut up" in whatever you're drinking! :P
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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Posted 08 November 2010 - 08:39 PM

I know I probably sound like a nut, but I kind of enjoy it. I've always been a weird eater, and im also dairy free and vegetarian...I guess its kind of fun for me to be different.
Sure I hate getting weird looks when i bring weird food, or not being able to eat the cake at a party, or having to look stuff up ahead of time, or accidently contaminating myself..(jeez maybe im talking myself out of liking it) But I like to know that i am doing something healthy and i like the challenge of finding/making new foods. Does anyone else relate?

I hate it. I hate always thinking about food. I hate that other people feel bad even though I'm okay when they eat in front of me (I'm gluten-free cf sf df and sugar free). I hate that I always have to carry snacks with me in a BIG bag when my friends get to carry trendy little purses. I hate explaining to people when I go to events and refuse to eat the catered food (while I pull dinner out of my BIG bag).

Maybe it's too soon... it's only been 3 years.
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dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010



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Posted 09 November 2010 - 07:29 AM

No, I absolutely do not like this disease. It has become an invader of my every daily decision. What to bring to work for lunch? What to eat for dinner, for breakfast. I work at a school and there is always food being brought in by parents and teachers. I sit at staff meeting with others at my table munching cookies, cakes, chips, all kinds of foods. Celebrations here involve wraps, sandwiches, lasagna, crackers and cheese, breaded wings etc. I sit with whatever I have brought for myself and the sweet young things wave their goodies in front of my nose or try to tempt me.

Darn goneit, YES, I would love a piece of that chocolate cake or cookie or whatever they have, but I stick to my own food for fear of getting sick.

I have been gluten free for a year and no, it hasn't gotten easier. I buy all the right food, read all the right documentation/cookbooks/magazines but no, things are still very hard for me.

I am facing age 61 along with a total knee replacement and I am scared about the pain, the immobility, my UC flaring, what I will eat at the hospital, at home when I get back... I will have to adjust my Remicade infusions so that there is a longer time between the last infusion, the surgery and the next infusion.

No I am not happy about this disease. As much as I try, I have been cc'd alot and my will sometimes crumbles. Yes I know I am in charge of my body, and what I eat... but jeez... :huh:
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Gluten Intolerance, Colitis, IBS, Lactose and Casein Intolerance, Gastro-Paresis, GERD, Arthritis. Taking Remicade and Asacol, 2 Prilosec/day among other meds. Officially a senior citizen! New knee is doing well.. now about that other knee...

Food is in my dreams and in my nightmares!



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Posted 09 November 2010 - 07:40 AM

I'm not happy about the disease per se, but since autoimmune diseases run on both sides of the family, I'm very glad to have this one rather than Graves disease, diabetes, or rheumatoid arthritis (all possibilities with my genes). I'm hoping that I caught it early enough to stave off the others.

I'm not happy that I have to watch everything I eat and that when I go out with friends I often have to bring my own food while they chow down (and then explain why to everyone), but I'm happy that I can actually go out with them at all instead of being stuck at home with migraines, GI problems and intense fatigue.

Sure, some nights it's really annoying not to be able to stop and grab a pizza for dinner if I don't feel like cooking. But...it's nice to have the energy to cook once again since I always used to enjoy it.

I'm very happy that my usual severe seasonal allergies are now lessened to the point that I can use OTC meds sparingly, if at all. And I'm thrilled to be able to eat dairy again (full serving of ice cream last weekend without a lactase pill and no illness = VICTORY).
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Looking for answers

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Posted 09 November 2010 - 07:49 AM

For the most part, it's become such a way a life that I don't think much about it. Yes, I live very differently than other people my age, but oh well! I do HATE having it when I travel. I also can't eat dairy, nuts or eggs. Getting food in other parts of the world or rural areas in no easy feat and I often get very ill on vacation and come back with acne, bloat and general malaise for weeks.
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

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